Discussions By Condition: Medical Stories

Sarcoid/Narcolepsy/Diabetes

Posted In: Medical Stories 0 Replies
  • Posted By: napsternova
  • October 29, 2010
  • 06:27 PM

This is my first post 'cause I cannot figure out my fatigue (sleepiness) problem. In 2006 I started falling asleep at work and while driving home. I had a sleep study done and it showed sleep apnea. So I started on CPAP. I was about 175lbs and fairly fit at the time. About 8 months go by and still the same sleepiness. Next two sleep studies show Hypersomnia/ Narcolepsy. OK so then I was put on stimulants like Adderall and Ritalin. Seemed OK for a while but as soon as they wear off, sleep... Then in 2008 I had an unexplained temperature for 7 weeks. After a myriad of tests a lymphnode biopsy showed Sarcoidosis.

Along with the fever I had:
Facial palsy - only right side
parotid glands swollen - both sides
loss of taste and smell - I actually had what I believe to be phantom smells. I smelled nothing but foul smell all day every day. That was really bad because I always thought it was me. My smell has come back to a degree.
Vertigo - I was unable to walk straight
Fatigue - seems to be the only lasting problem.

I was put on Prednisone for a couple months and finally after begging to be taken off the dr. took me off. I was having real bad psychosis, I thought I was going crazy at times.

I have had several MRIs but none show neurosarcoid, the docs at the MAYO, MN say it is still possible. I went there to see if the Sarcoid and my sleep problem were related, they said no.

Now my sleep condition is one that without stimulants I will sleep all day. Even with the meds I am sleepy at 8:30 -9:00 pm and can sleep 12hrs. I've never been like this. I also have Type 1 Diabetes that is under good control and is less of a problem than my sleep issue. Doctor after doctor has said I need to see a psychiatrist. I've seen two and they both agree that my sleep issues are not caused by depression. Although I do get pretty depressed I always carry on.

Now my Sarcoid expanded from my lymph nodes in my chest to my lungs. I've been tested like a lab rat with no explanations. I am here because I need help!

Thanks,
Jeff

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